Chronic cancer: When cancer gets stuck at “pause”

9 years ago, my son was diagnosed with cancer. He was just 3 years old.

I know what you’re expecting me to say next…either that today he’s healthy, or that our brave son lost his battle with cancer.

The thing is, neither is the truth. Our story is one that you don’t hear every day, but it’s the perfect example of both the shining success doctors have achieved in their fight to block out childhood cancers, and the heartbreaking shortcomings in our current ability to cure them.

The news no one wants to hear.

Our story started out not unlike many other “cancer” stories. Gage started not feeling well – fevers, body pain, difficulty moving like you would expect a 3 year old to move. Doctors weren’t sure what was wrong at first. Finally they ordered a test and found that he was severely anemic. The diagnosis was about as bad as it gets in the childhood cancer world: Stage IV neuroblastoma.

And so the treatment began. The doctors started Gage on what was considered the standard protocol at the time. We were cautiously hopeful. Unfortunately, his tests showed the cancer actually progressed during the treatment. That garnered him the title “refractory,” which basically means the treatment didn’t faze his cancer at all, and it was time for experimental therapies.

Fortunately, C.S. Mott children’s Hospital is one of only a handful of children’s hospital in the nation able to offer access to experimental therapies, so our team of doctors enrolled Gage in various clinical trials and experimental protocols.

One after another, we tried everything we could throw at Gage’s cancer.

The therapy that made the most impact for Gage was MIBG therapy. We did that twice – and really we think that was what finally stopped the cancer in its tracks.

At a standstill, stuck.

9 years later, that’s where we are today. We have succeeded at “stabilizing” Gage’s cancer. Whereas his cancer was once everywhere – spread throughout his body – we’ve succeeded in fighting it back to where now it is only in his skull. But that’s where we’re stuck.

This sounds like a sad story – but it’s not. It’s a miracle that he’s alive, and we know that without all that researchers have learned in the past ten years, he wouldn’t be.

Gage is a happy, dare I say “healthy” boy. He goes to school, he plays with friends, he has a pretty great quality of life. He doesn’t even really think about it. To him, cancer is his “normal.” As far back as he can remember, he has always been in treatment for cancer.

But I know better, and if I ever forget I am snapped back to reality every few months when he goes back in for tests to make sure things are still in check, and that the cancer hasn’t started to spread again.

Why am I telling you this?

Today is the last day of “childhood cancer awareness month.”

But please, don’t stop fighting. For many kids just like Gage, the fight won’t end tomorrow.

We have learned SO much about cancer, there are so many success stories. And even Gage’s story is a success story. He is alive! He is a thriving young man! The treatments have held his cancer back. We are thankful that God has blessed our family and the scientists who have found a way to keep our son alive.

But he still has cancer. We still don’t know enough. He still isn’t cured, and we live with that hanging over our head every day.

This fight is not over.

The reality is, it’s possible that he could live with cancer for the rest of his life. The doctors say they’ll keep trying things until they figure it out.

But we’re not going to figure it out with what the doctors know right now. It’s going to take something different. Something they haven’t discovered yet. And my son is not the only one living with what they call “chronic cancer.” We’ve gotten good at curing some kids, thank goodness. But what we know just isn’t good enough for all kids. It’s not enough for the kids we haven’t been able to save, and it’s not enough for kids like Gage whose cancers are stuck in “pause.”

Please think of that when you think about childhood cancer awareness. Be “aware” that what we’ve learned isn’t enough for all kids. What we learn going forward will make treatments safer for kids, more effective, faster, more thorough, with fewer side effects.

And for some kids, like Gage, it will be enough to go beyond holding the cancer back. It will help us someday actually give him what he deserves – a cure.

Melanie Bird-Bryce lives in Saginaw, Michigan with her husband, Don, and their children Maddie and Gage.

Block Out Cancer is a rallying cry for people from all walks of life to come together to support the fight against children’s cancers. Everyone has a role to play. Learn more about how you can help Block Out Cancer.

University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” and among the 10 best children’s hospitals in the nation by Parents Magazine. In December 2011, the hospital opened our new 12-story, state-of-the-art facility offering cutting-edge specialty services for newborns, children and women.

NOTICE: Except where otherwise noted, all articles are published under a Creative Commons Attribution 3.0 license. You are free to copy, distribute, adapt, transmit, or make commercial use of this work as long as you attribute the University of Michigan Health System as the original creator and include a link to this article.